The Life of a Two Year Old

Reading Time
Originally uploaded by joechays.

Nothing but trouble
Originally uploaded by joechays.

All this space is mine

All this space is mine
Originally uploaded by joechays.

We have a Lab Retriever named Jersey. (We got Jersey as a pup while finishing up our grad school degrees in New Jersey.) The pic above is of Jersey at our local dog-run which is at the base of the Brooklyn Bridge. He loves the dog-run because he gets to be off his leash and on his own. It's a huge space that he loves to explore. But most of all, he loves to do what he does best, retrieve. He'll do it over and over again until I finally get tired of throwing the tennis ball.

But poor Jersey has gotten the shaft since Ira's birth. He's lucky that we even remember to take him out to pee and poop. Please, don't call PETA on us or your local rescue clinics because we're still resposible but I gotta admit, I do feel guilty that he's not getting the attention he's used to getting.

I can't wait for Ira to meet Jersey. I think they will do well together.

I'm in Ira's room. He's sleeping. He, from what the night nurse reported, had a hard night. He didn't sleep much but instead cried most of the night.

The shift change is at 7 a.m. so we make it a point to call before 7 to see how Ira did overnight. Hearing about his night last night was hard. Those are the moments we wish we could be by his side. He's been sleeping soundly since 6:30 a.m.
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Laura and I are being trained on how to mix and administer Ira's Flolan. There is a company that sends a rep to the NICU everyday to teach us how to do it all. We've been getting the teaching over the past week or so. It's kinda scary as this medicine has a short half life. More on all this later.
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Some friends of ours are on the 10th floor of the hosptial giving birth to their little baby boy, Hans. Hans might need heart surgery but might not. Please pray for them.

I just got back from visiting Ira (he slept all morning long) and Laura is on her way up via the A train. The A is our daily commute to and from the hospital. It's about a 50-minute train ride from the Hoyt/Schermerhorn stop in Brooklyn to 168th in Manhattan. There are 14 stops between Hoyt and 168.

My commute via the A - or any other train, for that matter - is my daily reminder that we live in a broken, unredeemed world. (As if Ira's own predicament wasn't enough of a reminder.) On the A train it's not uncommon to hear a mother curse her five year old daughter. Beggars who look like they are on the edge of death are frequent. Cops checking bags and eyeing people of certain ethnicities are common these days. People pissed off at the cards they've been dealt in life are many. Christian zealots screaming at the top of their lungs that we're all going to hell if we don't repent from our evil ways are numerous. The mentally handicapped and physically disabled ride with their overworked, overextended and exhausted caregivers. Thieves, traipsing up and down the train, peddle the weekend's just released movie blockbusters in DVD format. Very young boys and girls straddle each other. And all this is what you normally see on the train. I won't even go into the random stuff that happens.

Yes - for those of you who are positivists and optimists - there are signs the world isn't as broken as we might believe and that we are on the road to redemption. When a person gets out of a seat for a pregnant woman or an elderly person so they can sit down, I'm reminded that good exists in the world. When someone engages my daughter in friendly banter, I'm reminded that hope exists. When I look at the pole in the middle of the train and see all kinds of colored hands holding on, I'm reminded that for a brief moment we are all one people in spite of being broken and longing for full redemption.

(WARNING: Thoughtless/Meaningless/Shallow post to follow)

Celeb T-Shirts Are Cool?

If you live in New York City - or LA from what I hear/read - you know that celeb t-shirts are chic. The trend took off when Eva Langoria wore the "I'll Have Your Baby, Brad" t-shirt. "Free Katie" t-shirts are selling like crazy. My personal favorite are the new "Jon Stewart for President" tees as I'm a big fan of Stewart's.

I love a good t-shirt. Laura and I particularly enjoy t-shirts from American Apparel and Brooklyn Industries. (Check out BI's Aslan tees.) While celeb t-shirts are cool and while they give me a laugh as I pass by people wearing them I'll stick with the lesson I learned back in the '80s when I begged and pleaded for a "Where's the Beef" t-shirt. It - and in turn, I - was cool for like a day and then I was back to being the dork that I really was.

Ira had a good weekend until Sunday evening. And the roller coaster took another turn, another dip. He's been cranky ever since Sunday night and that's no exaggeration. If he's awake, he's crying. He's in pain and when he really gets worked up, he can't breathe. Laura and I come home at the end of the evening shaking. Laura's there now and I'm on my way up a little later this afternoon. I'm tired of this roller coaster ride. There are days that Laura and I want off.

A quick update

Ira had a good weekend. Sunday was a little hard but nothing to what we have experienced. It seems that Ira took a turn for the better after we had the meeting with all his docs. We are holding off on the Viagra and the weaning of the CPAP and that seems to have helped him rest easier. He's slept quite a bit over the last three-four days. Sleep is good. We don't mind sleep.

Mom left this morning to go back to Tahoka, Texas. She was extremely helpful. We used her and used her hard. I'm sure she will get back to Tahoka and sleep. Thanks, Mom, for taking the time out to come and give us some extra help. Laura and I now begin the countdown to Laura's mom's arrival. Have I mentioned that life is much better with an extra pair of hands?

goin' swimmin'

goin' swimmin'
Originally uploaded by joechays.

I decided to take Sophia swimming the other day. We made the trek into Manhattan to a public pool in Central Park. The experience was miserable but the shot before we went looks great, huh?

It's Saturday and thus far Ira's had a good weekend.

While Laura and I mourn Ira's plight I am aware that there are those whom we know that are unable to have children. The author of The Kite Runner captures the essence of what it must be like for a couple who can't conceive:

Sometimes, Soraya sleeping next to me, I lay in bed and listened to the screen door swinging open and shut with the breeze, to the crickets chirping in the yard. And I could almost feel the emptiness in Soraya's womb, like it was a living, breathing thing. It had seeped into our marriage, that emptiness, into our laughs, and our lovemaking. And late at night, in the darkness of our room, I'd feel it rising from Soraya and settling between us. Sleeping between us. Like a newborn child.

The Meeting

I remember my first official job interview. I was a freshman at A&M and interested in working for an after school program. I was incredibly nervous going in to the interview. I remember the first time I had to defend a Systematic Theology paper in front of my peers and professors and the first time I preached in chapel at Princeton. I was a nervous wreck on the verge of a panic attack.

That's what today felt like before our meeting with the doctors. I was nervous. I couldn't sit down and couldn't focus on anything else. I finally asked Laura as she serenely sat nearby, "Are you nervous too?" She looked at me with understanding eyes and said, "yes." She wasn't. It's not in my wife's nature to be nervous like that. She's a cool customer but for my benefit she said, "yes." It felt good to know she was nervous too, even though she wasn't.

The meeting was to start at 11:30 but didn't get started until 11:50. The pulmonary hypertension doctor, neonatologist and his fellows and residents, feeding specialist, primary care nurse, and social worker were in attendance for the meeting. We had our questions typed out and ready to go. We began with specific questions like, "Why is Ira on both Viagra and Flolan?" and "What did the latest ECCO test show?" We moved on to more general questions concerning our goals like, "What's most important here?" and "What are the signs we are looking for to get him home or to the rehab?" We finished with questions that doctors hate like, "Where would you recommend Ira go after leaving the hospital? Home or Rehab?" and "What's your opinion about those two different situations?"

There were other questions we asked along those lines but that gives you the general sense of how things went down.

So here’s what I think you might be interested in hearing: We are going to stop the weaning from CPAP. In other words, Ira is going to stay on CPAP 24/7 for the next two weeks and we are going to attempt to reestablish his feedings from the bottle. We are going to put a hold on the Viagra over the next two days and then do an ECCO to see if Ira can make it on Flolan alone. The future is still in question. Our neonatologist doesn’t think Ira is progressing in respiratory matters. And so it’s going to be a while before he comes home or goes to a rehab.

Which brings me to this: Laura and I want Ira home. The rehabs are too far away. We can’t imagine not seeing Ira on some days. So over the last two days, we’ve made that shift mentally. One of our final questions for them was what it might look like for us to bring Ira home. We told them of our current lifestyle, that we have a two year old in daycare who is sure to get the round of colds that will pass from one to another once the fall and winter roll around. I told them of our ministerial work in Brooklyn and that it means that we have people in and out of our home quite often. We told them that our space is small. They were very clear about the ramifications of Ira getting a cold or any other respiratory infection: his lungs would fail and we would find ourselves back in the hospital.

To say the least, this has us second-guessing our decision. We’re thankful to have time to think this trough.

Overall, the meeting went well. They didn’t look down on us but talked to us like peers. It probably helped that we were prepared and had an agenda. But I’m sure they could tell that I was anxious as I twirled my #2 pencil nervously the entire time.

Today Ira is three months old. Remind me to tell you his birth story at some point. Have I done that already? There is nothing cute about it but just I as I told Sophia's birth story a hundred times, I think it's important to document Ira's birth as well.
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Ira had an EEG yesterday and an MRI today. We want to make sure that all this recent irritability and extended back/head has nothing to do with a neurological disorder such as seizures. Ugh.
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We will have our family meeting today at 11:30 with all Ira's docs. It was an amazing feat to get them all together. We'll meet with Ira's pulmonary hypertension doctor, the surgeon, the neonatologist, the feeding specialist and Ira's primary care nurse. We have thirty minutes with them.

I'm here in the room with Laura and Ira. He refuses to eat, or rather, take from a bottle. It concerns us and is beginning to concern the feeding specialist. However, the feeding specialist is amazing and is going to Plan B, as she calls it. We'll see how that works.
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It's well known among our doctors and nurses that we want a family meeting. So I hope that they will make it happen soon. I've got a typed out list of questions that we will ask of them hoping to get a good idea of what's going on and where we are going.
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Laura and I are going to a movie tonight...that is if we can agree to what movie we should see. And while I'm excited about the movie tonight I'm more excited that my mom is planning to cook us a meal before she leaves this weekend. On the menu is fried chicken, cream gravy, mashed potatoes, green beans, and rolls from scratch. This is by far my favorite meal in the world. And there is nothing healthy about it. Even the green beans are manipulated in such a way that when it's all said and done, I will have to spin extra hard in my cycling class!
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I left the house this morning with Laura and Sophia dancing. The iPod was plugged into the stereo blasting at levels I'm sure our neighbors appreciated. The song they were dancing to? Baby Got Back. It was a fun moment watching Sophia wearing just her diaper shaking that thang!

There was quite a rumbling in my section of the NICU today. I heard these words from a nurse to another nurse, "a CDH baby was just born." It was suddenly a busy bee-hive. The CDH must be severe because the ECMO team had the ECMO out and ready. They were just waiting for the word. As I walked past them, they all nodded at me as we all quickly replayed the eight long days we lived together back in April.
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Check out this week's Newsweek with Karl Rove gracing the cover (smile). On page 53 there is an article entitled "Babies Who Take Viagra: The drug for men with sexual-performance problems also helps some kids with a life-threatening disease." The one page article is about how Viagra is being used to treat pulmonary hypertension in babies/kids. Sound familiar? That was a pretty cool discovery as I started thumbing through my Newsweek.
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It was a hard day with Ira today. He was cranky much of the day. He looked and sounded like he was in pain. He still isn't taking the bottle and because of that the doctors decided to keep Ira on the CPAP full time and work on getting him bottle fed. Trying to wean him from the CPAP and attempting to get him to eat from the bottle was just too much work for Ira.

We requested to have a meeting with all of Ira's doctors and so that is in the works but is no small task to get them all together. We aren't real sure if they are all on the same page so it will be nice to sit down with them and hear what we are working for and what our goals are.

Strollin'

Before the Big Walk
Originally uploaded by joechays.

The nurse thought it important that Sophia take her little brother for a stroll today. So we made it happen. It's quite an effort for a five minute stroll up and down the hall but Sophia was proud. She kept telling the nurses, "I take Iwa for a walk." She did not let go of the side of that stroller.


Taking a stroll
Originally uploaded by joechays.

Ira is on the CPAP most of the day. We cut back on the weaning. (Or should I say, "we are weaning the weaning"?) We realized he was working too hard on the nasal cannula and so he's back to spending most of his day on the CPAP. He's still spotty on his bottle feedings, sometimes taking the bottle but most of the time not.
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I will be glad to report to Ira that the Yankees took the four game series from Boston - winning three of four - in spite of the Yankees having a horrific pitching staff.
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Laura and I will probably sneak away one evening while we still have my mom in town and go see a movie or something like that.

Any suggestions?

From the sci-fi novel Children of God by Mary Doria Russell:

"...it is not rebellion or doubt or even sin that breaks God's heart; it is indifference."

Thoughts?

I just finished with my workout at the gym. As I walked home I looked forward and saw no one in front of me on the sidewalk. I noticed there were no cars zooming down the street. I looked to the opposite sidewalk and didn't see anyone there either. And it dawned on me that I was all alone. This doesn't happen often in the city. But when it does the emptiness is like no other.

Laura arrived home last night (Wednesday) from the hospital looking like she had just been run over by a truck. She looked whipped. She looked beat. She looked exhausted. Turns out that she had a hard conversation while at the hospital with the social worker and nurse. They began prepping Laura for the future. This is, in a nutshell, what they said:

Ira is sick and could possibly be sick for a long time. There is only so much we can do here at the hospital for Ira. You have two choices: 1) Send Ira to a rehab hospital where he can get more services on a daily basis. 2) Take Ira home and care for him there with the help of home health care.

Sounds good, huh? The rehabs are reputable. We've been reading through their literature and they seem confident in their abilities to care for someone like Ira. Having Ira at home would be nice as we've been waiting for that day for months now. We feel confident that we could care for him with the help of home health care.

But here are the problems with the above choices: 1) The two reputable rehabs are nowhere near us. One is in New Jersey and the other in Valhalla, NY. If we thought our commute was bad now... 2) Our 800 square foot apartment all of the sudden became smaller. With Ira, all his equipment and a nurse our space is suddenly compromised. And they said that Ira would not be at all ready to go out, that he would be bound to the apartment, which in turn, binds us to the apartment.

I'm aware that there are families that care for chronically ill children and have accepted their plight without fuss. I'm aware that by saying our 800 square foot apartment is not big enough is something only a rich American could/would say. So for some of you, the problems expressed above may not seem like problems at all but for us, this is what we feel at the moment.

Any thoughts?

My mom shared this in the comments of the previous post but I thought it deserving of its own space:

What a blessing to get to love on our sweet, sweet boy! He looks just like his Daddy did when he was a baby! He has grown a lot since I saw him last and those gorgeous blue eyes are soooooo precious! Oh God, thank you so much for Ira and his mom and dad and sister. Thank you so much for providing him with this family that continues to love on him through lots of tough days.

Sophia is so sweet and so much fun! She and I watercolored, danced, read books, and walked to the grocery store to get some grapes this afternoon. She is very imaginative and has wonderful expressions.

I'm amazed at Joe and Laura and their stamina. It's really, really hard to travel to and from the hospital daily even though you're sitting on the subway most of the time. Then as much fun as it is to hold Ira for hours on end, it's also very tiring and a little bit nerve-wrecking since he continues to work soooo hard for every breath he takes. Their friends continue to provide meals almost daily and minister to them in so many ways! I am amazed at the warmth and hospitality and love of these born/bred Yankees and the Yankee transplants! Joe and Laura's family is blessed beyond belief when you consider God placed them in NYC for this journey...because of the ministry surrounding them and because of the medical benefits surrounding them.

Joe F. and I thank all of Joe C's and Laura's friends as well as their extended family's friends for the many, many acts of kindness. We love all of you and thank God daily for "every remembrance of you!"
Glo/Mom/Gram

She's a natural

She's a natural
Originally uploaded by joechays.

This is one happy Gram. My mom wouldn't let go of Ira this morning. I'm not sure how many times I asked, "Mom, do you need a break?" And each time I got a look from her that said, "Are you crazy?"

Ira had a good day. He was peaceful and rested easy. He did okay with the bottles today. And because Ira's day was good and peaceful so was Laura's and mine. We hope to rest easy tonight as well.
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In other familial news, it was Sophia's first day in daycare today. (Some friends of our family made the first two months financially possible. Thanks, A and J.) Laura reported that Sophia was not happy about it but we learned from the staff that Sophia soon got into a rhythm with the other kids. She'll go twice a week. This should be of help to us all as Sophia needs to brush up on her socialization with her peers and we need a little break from managing our hectic schedule.

CCfB in D.C.

reps from Christ's Church for Brooklyn
Originally uploaded by joechays.

Regina, Erin, Hilary, Casey, Tom, I and Derrick represented Christ's Church for Brooklyn in D.C. this past Sunday as we attended the Worship in the Spirit of Justice service. (There were over 40 of us representing the Manhattan Church of Christ and CCfB together.) The service was the final in five services. The purpose was to raise the awareness of the genocide taking place in Darfur and to do something to stop it. Over 400,000 have died in the Darfur region of Sudan and not much is happening to stop it.

It was a good trip but fast and furious. We left Brooklyn at 7 a.m. on Sunday morning and didn't get back until 9:15 PM and of course, I had to go see Ira when we returned.
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Ira's doing...hmm, I'm not sure how to put it. The scene Laura described in our last post is happening often these days. It's very stressful. He's taken some steps back on his feeding.

I don't even have the energy to say more about this. My mom gets into town tonight. It will be nice to have some help around the house.

From Laura:

Any given moment in room 708

Steady holding at 93…talking, cooing, looking, is that a smile? Sudden look of panic…Mom, can’t you help me? Neck and back arched, trying to breathe, to catch a breath. Crying begins…pat, pat, pat on the chest. It’s ok, mommy’s here. You’re ok sweetheart. Pat, pat, pat. Not good enough. Crying intensifies…90, 85. 75 blinking in red and sounding the alarm. Its ok…hard patting continues on the chest. 70, 65, 55…turning blue. Panic from mom and baby. Burst of oxygen needed…seize the knob and crank. Fumble through all the wires…is the Flolan line ok?…cradle and bounce being careful of the feeding tube. No unnecessary reflux, please. Calming down and coming back up…65, 75, 85 alarm subsides. Pink replaces blue. Mom and baby sweaty, clammy. Whew. Need to step out of the room and catch my breath.

My baby has come a long way but has a long way to go.

Have you seen the documentary Super Size Me? Morgan Spurlock eats nothing but McDonald's food for 30 days. He eats breakfast, lunch and dinner at McDonald's. It gets so bad for Spurlock that his doctor tells him about midway through the month that Spurlock must stop because his body is shutting down.

Spurlock is back. He is doing a television series on FX called 30 Days. I am only slightly overstating it when I say this reality series is the most important work being done on television. The first episode Spurlock took on the challenge of living on minimum wage for 30 days. In another episode a "God-fearing conservative homophobe travles to San Francisco's Castro district to live with a gay guy." In another episode a "Christian agrees to uproot his life among like-minded family and friends and live for 30 days in a large Muslim community." In yet another, "a mother concerned about her daughter's alcohol consumption now that she is in college agrees to binge drink for 30 days to try to get through to the daughter."

These willing participants aren't out to win any prize. There is no one million dollar goal. They don't seem to be out for their fifteen minutes of fame. It seems that their only goal is to challenge their pre-conceived notions of life in someone else's shoes.

Laura and I have watched a couple of these episodes and we always find ourselves talking about it after it's done. It challenges us to ask, "How would we respond in that situation?" and "Are we aware of our own biases and prejudices?"

We had a good weekend with my friends from Ft. Worth. They came in on Saturday night and we took them to see Ira on Sunday. When Jake saw Ira he said it was like seeing someone famous. On Wednesday I went to an all day meeting and Laura went up to see Ira. Jake and Abbie stayed at our home to watch Sophia. When we returned on Wednesday evening our laundry was done, our burned out light bulbs were changed, our house was clean, our fridge was restocked and Sophia was well taken care of. It was nice coming home last night. Thanks, Jake and Abbie, for all your help.
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Ira had a hard day on Wednesday. He didn't take the bottle at all yesterday and his reflux is getting worse. The reflux issue is totally normal for CDH kids. But no matter how normal this is, it's hard to see him gag like he does. It looks so painful.

The good news is (and probably the reason he didn't take a bottle yesterday) that Ira is now spending eight hours a day off the CPAP. At two different points during the day he spends four hours off the CPAP and on the nasal cannula. He works so very hard to breathe. I take for granted the simple process of breathing but Ira works for it and works hard. You can see him working and hear him working.
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Our surgeon came by Ira's room on Tuesday while Laura was in the room. The surgeon was with a group of surgeons from the children's hospital in San Francisco. He was giving the San Fran doctors a tour of the NICU and pointed out Ira to say that Ira was the reason you don't give up on severe cases of CDH.

I'm so glad we are in NYC for Ira's sake. The doctors and nurses have worked hard for Ira's life.

The 4th on Pier 1

This picture is missing only one thing...

Originally uploaded by joechays.

Sophia hung on very tightly!



Originally uploaded by joechays.

A good day.

My day began by taking Sophia and our dog Jersey to the dog-run in Brooklyn Heights. Sophia loves going there and seeing all the other "puppy dogs". We then went to the playground where she had the place to herself. We walked home via the Promenade. We sat down on one of the benches and I pointed out the Statue of Liberty and Brooklyn Bridge to her. I asked her if she was ready to go home. She responded by saying "maybe later."

I had the afternoon shift with Ira. The nurse and I put Ira on the nasal cannula and then got him a special stroller. I took him for a walk around the NICU. All the nurses wanted a glimpse of Ira as he made his first stroll. We then went back to the room where Ira stayed off the CPAP for two hours. He took 25 cc of a bottle from me with no problem. And then he fell asleep.

It was a good day indeed.

Why is it that people assume that I am far from God when I question God? Why is it that when I say, “God is not my friend,” I am asked to reevaluate my friendships here on earth and my relationship with God. Why is it that when Laura cries out to God in anger she is sent letters from friends and family prompting her to “hold on” and “persevere”? Why is it that you must ask of us in fear and trepidation “how are you doing spiritually?”

The truth is that in the midst of all the questions, anger, frustration, and confusion; in the midst of not wanting to sing praise songs in church or praying or partaking of the communion; in the midst of bitterness, loneliness and sadness I have never felt closer to God than I do now.

The closeness I feel with God can’t outwardly be seen in ways that we normally associate with someone who is “on fire” with God. I don’t wake in the morning and open the Bible nor do I go to sleep with Psalms running through my head. My prayers are short, consisting of mostly the same two or three phrases, “God help Ira. Thank you for my family and for those helping us. Amen.” So I don’t sit for hours praying and meditating. I don’t listen to Christian bands or praise music on my iPod as I commute nor am I reading anything of theological substance. So there is no way that you could tell from my actions that I feel close to God.

But deep down inside I feel God stirring like never before. This doesn’t mean that everything is a-okay. This doesn’t mean that everything comes up roses. This doesn’t mean that I’m letting God off the hook because as Ricky Racardo would say, “you got some ‘splain’ to do!”

This stirring, this intense presence of God in my life is allowing me to know God in ways I’ve never known him before. So I ask that you lay off the “how are you doing spiritually?” kind of questions because it leads me/us to believe that you think we are going to hell. I’m pretty sure that God is not fearful of our questions or struggles but invites them because he longs to show us more of himself.

RANDOM NEWS AND NOTES:

Sophia woke up at 4:45 a.m. this morning raring to go and singing the Barney theme song. Does anyone know a hitman who could take out Barney for me? Ugh!
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I've been working out three/four times a week since January. I took several weeks off during Ira's birth but quickly got back on track. And the only thing I've got to show for all this work is that I can finally touch my toes...as of this week...with a slight bend in my knees. I'm getting old.
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My family is gathering in Tahoka for the 4th. That may sound like a drag to spend your 4th in west Texas but you would be mistaken. My mom's and dad's backyard is an oasis in the middle of all the west Texas cotton fields. I'll miss jumping off the roof of the house into the pool, late night hottub dips and millions of cable channels to choose from. Have fun fam!
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Friends from Ft. Worth will spend time with us this weekend. Jake, Abbie and their daughter Ellie will hang out with us and help us manage our life with Ira. We'll take in the fireworks off the Brooklyn Promenade and Jake and I will attend a Yankee game. Other than that, we'll just be managing our schedule with Ira. We can't wait to see them.

So what are your plans for the 4th?